what's happening with him!, he was supposed to be ok in London!.
19th may: After a long and gruelling wait, the time finally came and we got the news that Oliver was booked in and ready to go for his pda operation. At this point, the date still needed to be confirmed, but he was booked in and a bed had his name on it. Unfortunately, it was hard to get excited as we had already been told time and time again he wasn’t going to go. Furthermore, it’s hard to get excited about your child having an operation. As much as we wanted to get this done for his sake, the thoughts and panic soon overtake your mind.
We received this vcreate image with the following message.
After visiting Oliver, and still no specific time or day given as to when he would be leaving, I just sat with him talking about life really. The good news is that he was free of infection, and he was also carrying less water retention. Speaking with the nurses they were hopeful that he would be going very, very soon.
After leaving that day feeling happy Oliver was doing well and things seemed to be on track, Frances and I had a relaxing afternoon. The sun was hot, and we just chilled out in the garden. Then we got a phone call from the hospital.
As you can all imagine, every phone call we received from the hospital was met with anxiety and caution. The call came to us at I believe 9pm, and this only fuelled the anxiety… why would they call this time of night? Surely only to tell us something was wrong? Fortunately, this was a good phone call, " Oliver will be leaving within a few hours to go to London to have his operation in the morning".
Filled with a wave of relief, it was finally a way for him to move forward and this was all we wanted.
The hospital asked for one parent to go down to London with him and it was decided very quickly that it would be Frances; I had no issue with this as I was scheduled to work the next day and it was getting more difficult to take time off.
Frances made her way to Oliver, and at 12:40 am on the 21st, Oliver left Brighton hospital, and a few hours later arrived at London St Thomas Eveliena.
I didn’t get any sleep this night as hundreds of thoughts raced through my head. I was also feeling many, many emotions; happy he had gone, anxious he had gone, scared was a major one. Will he agree with the surgery? Will they find he does have a narrow and leaky valve? What would that entail? Unless you have been in this situation, I’m not sure these feelings can be understood; it’s hard to try and explain to someone on the outside looking in.
21st May: Arriving at London early hours in the morning, things didn't seem to go as planned.
At 5am it was discovered that Oliver had arrived at London with another infection. I couldn't believe what I was hearing, surely this should have been discovered at Brighton?.
So angry with what I was hearing, I was beside myself.
And to make things worse, Oliver hadn't agreed with the trip. He was needing yet another blood transfusion, he looked unwell, and just in himself he wasn't right. With yellow skin and trouble breathing, I felt useless, more so as I wasn't there due to covid.
Most of the day was spent just trying to get him settled, the staff were working around the clock to tend to Oliver's needs. My only source of Information was Frances, and she was put up in the nurses’ accommodation as she had to have some sleep so this meant information was far and few between.
Things went from bad to worse for Oliver on the night of the 21st.
For the first time since being born he was needing 100% oxygen and was placed back onto the high frequency ventilator. This situation was far from ideal; 100% oxygen used for long periods of time can have a significant impact on the eyes, so that was another worry.
Additionally, his blood pressure had spiked and was sky high, so meds were needed to amend this. He also needed more platelets; water retention was again at its peak.
For the 4th time we were told to possibly expect a phone call… things didn't look good.
After further tests, more things were coming to light.
They believed the infection was from his bowel, so more meds were given. The left side of his heart was bigger than his right side, this was due to the aortic stenosis, so the left side was doing more work.
With all of this in place, it was impossible to do the PDA surgery… one step forward and 10 steps back.
I can’t explain how scared and upset we both were.
Frances phoned me after leaving the hospital on the 21st and explained about accommodation etc.
We were allowed to stay in Gassiot house, which is mainly used by the nurses, but special privileges were given for families in our situation. Unfortunately, the Ronald McDonald charity home was closed to covid (which would’ve provided alternate accommodation for us), but we were put onto the waiting list.
We would be in London until Oliver was fit to have his PDA surgery and be able to return to Brighton. This would be at Gassiot house, or Ronald McDonald should covid restrictions permit it.
I'm going to do a digression pt8 (Accommodation) on this, as the accommodation and living arrangements had a major impact on myself and Frances.
But for now, it was Gassiot house.
We were just happy we could be with Oliver as much as we needed to, it was such a relief.
I just wanted my boy to get better and to be able to take him home, the sad reality was we both knew this might not ever be our reality 😔.
Next, I'm just lost, come on boy you got this…
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